Squamous Cell Carcinoma - brother in law who is mentally handicapped diagnosed

TheFitts

Posts: 8
Joined: Aug 2012

Aug 26, 2012 - 12:01 am

Hi, my brother in law was just diagnosed with Squamous Cell Carcinoma, stage 4. He is 52 and mentally disabled---it is hard because he is highly functioning so often we aren't quite sure how much he is actually grasping. At times he seems totally in tune with us, but then he will say something like "I gargled with salt water this morning and was able to spit up some stuff and i think I am getting better."

He has a large mass in his neck and it is in his surround lymps down to around his collar bone. His breathing had become severely labored and he could hardly talk or swallow over the last week while we were waiting for him to get surgery, which was yesterday for a trech, feeding tube, and chemo port. He begins radiation September 5 and we are waiting on the chemo treatment schedule.

He has been a heavy smoker and alcoholic most of his life. He didn't come to live with us until their mom became ill a couple years ago. We have gotten controll of his drinking. He is 5'10 and only ways 140 going into this treatment. When the doctor was talking about long term outcomes, I was more concerned with short term and whether his body could handle the chemo and radiation.

I've been trying to figure out how to explain to him what he will be going through, how it is going to be rough, but when he beats this, will be much better. I liked the 'sunburn' description, but he is african american, I am white - so to me, I know all too well how a sunburn feels, but my husband says they haven't experienced sunburn.

Here are questions I have come up with:

1) What to expect throughout the treatment process.
2_ What will he be able or not be able to do.
3) How much will he sleep?
4) Has anyone else had to handle a love one with a trech? I know they will give us training but some times you get the best tips from family members rather than professionals.
5) Will he need assistance going to and from appointments
6) What types of things should I buy for him to eat or drink when he is ready and wants to
7) If he gets sick from Chemo, is there a warning, will he make it to the bathroom or should he have a bucket ready.
8) is there things we should do to modify the house

It is hard, but will be very doable for him and the family. I’ve traveled the road and came out ok (just ask my psychiatrist, not really, just kidding about psychiatrist). I have had radiation and Erbitux treatments. It is approximately 3 weeks of build up, 5 weeks side effects and a life time of after effects. There can be nausea, sore throat, sore mouth and tongue, difficulty swallowing, sleeplessness, anxiety, neck burn, just to name a few. Not everybody gets every side effect and the degree of pain can be excruciating to some and not to others. For example, while my throat was sore and swollen and my radiation onc said it was “a blaze” I never had too much pain. Now for neck burn it was my turn to cry, it really hurt. You just don’t know how bad it will get, we can predict pretty accurately but it is the luck of the draw (and dependant on how bad the cancer is).

Anyway, welcome to this site, we have all the great H&N people (at least I think they are great).

Best,

Matt

3) I sleep lots, some people can’t sleep
5) Yes, someone to drive is good
6) Boost, Ensure by mouth, Jevity by PEG, Chemo onc and Rad onc set us up with lots of choices
7) Nausea medicine helped me keep from getting sick
8) Kleenex , waste can, dedicated chair, I even slected the utility room sink for spitting and rinsing.

I just can tell you about some of my experiences. First of all, I had a tracheotomy, which is a temporary breathing tube through the neck into the trachea. This was followed by a total laryngectomy, which is a permanent tube in the neck (the opening called a stoma.) A laryngectomy does not necessarily follow a tracheotomy; many tracheotomies are reversed. It depends upon where the Cancer is.

Mucous is a big problem with a Trach (or Larry). I can cough to clear my airway, but I cough a lot. I use paper towels rather than tissues. Tissue just disintegrate too easily. I go through almost a roll of paper towels every day.

However, when sedated (like right after a surgery), the cough reflex isn't all that strong. That's when Respiratory Therapy (RT) shows up in the hospital room to suction. For the first few days when I was in the ICU, I think RT showed up about every 3 hours. Being suctioned is extremely aversive, because the sensation was that I was being suffocated. It is not possible to breathe against the suction machine. Although each suctioning effort lasted only (say) 10 seconds, it felt like forever. And usually there were 4 or 5 efforts each time the RT came into the room. That is, they suctioned for 10 seconds, took the tube out. Waited 30 seconds then suctioned for another 10 seconds.

I became apprehensive towards the Respiration Therapists. Dread as soon as they came into the room. Now, I knew they were doing their jobs; and I knew they were actually necessary to keep me alive. And I knew it at the time. But i still dreaded each time they came into the room.

I was sent home with a (rented) suction machine. I suctioned myself for maybe a month after being released from the hospital. Self-suctioning is better than having someone do it to you. For the last six months, I didn't have to use the suction machine, although it is still on my table.

What does this have to do with your brother? First maybe nothing; he may not need suctioning either at the hospital or at home. If suctioning is needed in the hospital, I might suggest that he stay in the hospital until suctioning is no longer needed, or at least not needed very often. It has to do with the level of sedation.

And if he is at home and doesn't need much suctioning, but they rented you a machine anyway because he might need more suctioning as sedation is increased (or pain meds) during the treatment, then maybe do some shallow light suctioning so he won't be all that fearful.

On another related topic: To review: I had an almost emergency trach placed. Sent home. Then a couple of weeks later I was hospitalized again for the laryngectomy.

When I came home with the initial trach, the trach tube slipped out from the trachea and dead ended in some neck tissue. This produced a sudden, unexpected difficulty in breathing. I could get a little air through the mouth and I guess a little came through the cut in the trachea and the hole in my neck. But the sensation was, I couldn't breathe. This prompted a call to 911 and an ambulance ride to the nearest ER. It turned out not to be as serious as I thought, the fear produced by not being able to breathe was more intense than the actual risk of dying. But when your living through it, you don't know why it's suddenly so hard to breathe, and I felt it was impossible to calm myself.

But here's the thing. Any sudden decrease in the ability to breathe produces intense terror. There is not other word than terror. And there aren't many thought processes going on. So if your brother suddenly seems very frightened, or wakes from sleep in a state of terror, think about his airway. My lips were not blue, but I had the sensation of suffocating.

The other cause of terror is being isolated. Every so often after the hospital staff left my ICU room, the call button was out of reach. I always found that state of not being able to summon help terrifying. And once home the patient without a voice needs a bell or some other device to call for help.

I didn't mean to dump on you. None of this may come to pass with your brother. His airway may be clear from the get go. But I do want to forewarn you about the fear produced by airway obstruction. I would hate to think that some emotional actions would be attributed to your brother's "mental challenges" when in fact the root cause was an airway obstruction. I saw on 60 minutes, that navy seals are trained to react to loss of air; but 80% of trainees fail to master the challenge of acting "rationally" when they are deprived of air.

I probably wrote too much. Your story has touched me emotionally, and this may be too emotional response. Rick.

Rick and Matt have pretty much covered all your questions very well. As far as question number six, I doubt that you will need to get him anything soon except for stuff to put in his feeding tube. His mouth and throat will most likely be very sore. Even with a feeding tube, I went from 220 pounds down to 129 during the year. The pain was excruciating to swallow. Ensure and Boost are really only supplements if he is able to eat other things by mouth. I assume, since he is "mentally challenged" that he is on some kind of governmental assistance. I know Medicare covers the cost of my formula (Isosource) in full because that is my only source of "food". You might want to ask his doctors to prescribe some sort of formula that has all the nutrients he needs. When I was going through treatment, I didn't know anything about Social Security Disability covering me. I used Boost and Ensure. That and feeling nauseated all the time was responsible for me losing so much weight. Good luck.

Thank you everyone for your help. My head is spinning. We went to see Bobbie today and he is in good spirits. They said he will be coming home tomorrow or Tuesday. I have so much to do and so little time. I came up with a few more questions.

1) humidifiers/vaporizers? They said we had to keep the air moist. Should I get something for the two major rooms he will be in to keep the air moist?

2) can we overfeed him? Is that a danger? He weighs so little I want to try and keep as much nutrition in him as I can. I'm wondering about feeding him more often in many smaller 'meals'.

3) someone mentioned a dedicated chair. like a recliner in the living room?

4) clothing - i'm thinking several outfits that are comfortable like sweatpants, etc.

5) bathing - as he gets fully into theray will he be strong enough to take a shower? shower chair? hand held shower head?

overfeeding, not likely. but it's all about the daily calories. for a 5'10" male, I'd look at 1800 cal/day as a minimum. I'm currently getting 2500 per day via tube, and nobody is gonna mistake me for obese, lol.

doesn't the hospital have a nutritionist who can steer you right on these questions? St. Anne's in Toledo has been very aggressive about getting/keeping me on a nutrition plan.

I had "light chemo" and very little nausea. So this may not apply to your brother-in-law (I finally got the relationship right?). CRACKERS! That was a good anti-nausea food. Of course, I did not have mouth sores.

I found it best to have a little in my stomach. Never empty, never full. So while on chemo I nibbled all day long. Rick.

I'm 5'11", had dropped to 130 by the time my treatment started, and bottomed out below 120 before treatment ended.
Aside from Ensure and Boost, his docs can give him prescription nutrition for tube. I use Osmolite 1.5 (355 calories/can) from Abbott, but there are others. In my area, a company named Infusion Partners ships a couple of cases to me every two weeks. I'm sure the hospital nutritionist can hook you up with a local medical supplier.

I didn't start gaining weight again until I got religion about tube feeding: 6 cans a day, minimum. Anything I can eat/drink orally is gravy, so to speak.

I'm hopeful if your brother-in-law is African American that you won't need to address a radiation burn. I was fortunate that my neck just turned very dark brown and peeled the week I finished radiation. I attributed that to the fact that, while white, I always tanned easily and had an olive tone. That was just my theory.
I did not have a recliner but did have a dedicated chair with arms and an ottoman. It was much easier getting up & down than our sofa was. Yes, I slept allot. Nutrition and hydration are key. I did not drive while on the pain meds but the extra set of ears at appointments is very beneficial. Comfy clothes a must! Likely, will just need to remove top and put on gown for radiation tx. As others have said, everyone doesn't get every side effect. With a caretaker like you, looking to meet his every need, I'm sure he will be well ahead of the game.

There is little for me to add...I know that because I was very thin when I started treatments, that the Dr.s were concerned, so I had the tube put in. There is no chance in the world that you will overfeed. Do encourage him to eat all he wants for the time being, as his taste will diminish relatively quickly once radiation is started. Other side effects are just as everyone said...each person is different. My neck never bothered me till the last week, but still I did not suffer from radiation burn nearly as much as others. I never got a sore throat, either...nor did I ever have a mucous problem.

Chemo on the other hand seems to hate me more than some others...and I've had a very sore mouth due to that for two months now....with another month to go :(.

How to explain all this to your BIL, and know he's gotten the full picture...I don't know...you said he is high functioning, so I would say just telling him the truth, without all the medical jargon and he will understand.

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